Peer advocates supporting older people affected by cancer

Category Archives: Advocacy

Research and technological advances mean that new cancer treatments are continually coming on stream. This is good to know given that the number of people living with a cancer diagnosis in the UK is set to double from more than 2 million in 2010 to 4 million by 2030. But what about the people who actually help those affected by cancer, doctors and nurses for example. How is the cancer workforce keeping up with change and preparing for the future?

rising demand for services and increasing complexity – e.g. people living with multiple long term conditions

poor coordination and communication leading to lack of support for recovery

Macmillan calls on Health Education England and the NHS at national, regional and local level to work strategically to ensure people living with cancer experience well-coordinated continuity of care: ‘Our vision is for a workforce that can deliver holistic, patient-centred care and support. It is based on understanding the needs of people living with cancer and the access they need to other services that will contribute to their care.’

The report explains that ‘Delivering truly patient-centred care means ensuring that people are supported before, during and after treatment… Without the right workforce in place, they … may not have the support they need to optimise their quality of life after treatment. They may not always know who to contact for support nor how best to do so. We know they do not always have enough time to talk through all their concerns or be supported with non-clinical issues, such as financial support.’

Macmillan recognises that ‘Volunteers and people affected by cancer, including carers, also have an important part to play in the cancer care team’. My personal view is that highly trained professionals can fail to see the full potential of volunteers. Peer volunteer advocates are entirely patient or person-centred in their approach as the very nature of advocacy demands that it is led by the service user or advocacy partner as we prefer to call them. Volunteer advocates specialise in finding things out, sourcing additional support and facilitating ways to access that support. Volunteer advocates have time to listen and to build a trusting relationship. Volunteer advocates will not offer clinical support but they will help to ensure people can understand information that they are given and feel ready to make informed choices about treatment and care as well as exploring practical and financial support needs.

The report goes on to say ‘Encouraging retention of staff will also be hugely important, as will looking at the potential of retired professionals as volunteers.’ In Dorset we have proven that staff who reach retirement age can be retained in the workforce by the offer of challenging and rewarding volunteer roles such as providing independent advocacy support. Time our Gift to You includes the stories of several former health professionals. Mike Goodman, retired Clinical Nurse Specialist from Dorset Macmillan Advocacy rightly observes: ‘After many years as a health professional you do build up a wealth of expertise and numerous medical contacts which it seems a waste to suddenly abandon just because you retire.’

The Macmillan report recommends next steps and advises that ‘Solutions will be unique to each local context and will require the input of a variety of local stakeholders, including Cancer Alliances, Sustainability & Transformation Plans and local NHS providers.’ We are trying to help colleagues in statutory services in Dorset to understand what trained peer volunteer advocates can do and how they are contributing to the skill mix of the cancer care workforce for the benefit of people affected by cancer locally.

Today Rhonda Oliver of Advocacy in Barnet highlights some of the difficulties faced by those attending chemotherapy appointments:

As many older people affected by cancer will tell you, getting to and from their chemotherapy appointments can be a nightmare.

Public transport in the UK is dirty and overcrowded and people worry about picking up illnesses when their immune system is suppressed by chemotherapy. Journeys to and from Central London from the London Borough of Barnet may involve multiple bus and tube journeys. For older people affected by cancer the prospect of such journeys when they are feeling exhausted and unwell is very dispiriting and when they finally get home they are too tired to prepare a meal and eat it.

“My daughter’s main hospital is in London and parking is nigh on impossible. We are unable to use public transport owing to her condition. She has an inoperable brain tumour which causes her to have frequent seizures, making it very unsafe to use the London Underground”.

If patients are eligible for the ambulance service there is usually a long delay while the ambulance winds its way around Barnet. One of our clients said:

“We do qualify for hospital transport, but this frequently entails a 2 hour wait for our journey home and this is extremely tiring and stressful, especially as the journey itself usually takes an hour or so – depending on the traffic – and whether or not there are any other pick-ups/drop offs en route”.

Many patients feel too unwell to drive themselves and may have to rely on friends and family to drive them to their appointments. Parking is often difficult to find and the parking fees may be prohibitively expensive. There is also the stress of worrying about an appointment over-running time, with the prospect of a parking fine to add to the misery.

So how was Advocacy in Barnet able to help to reduce the burden of transport on these patients? It did so as the result of an extremely generous grant from Barnet CancerLink, a local non-medical Barnet charity. This grant enabled us to work with two local taxi companies to provide a free taxi service for patients to and from chemotherapy and related cancer medical appointments. The grant also enabled us to provide a cooked meal on request when people were too exhausted to cook after their appointments.

We were able to help 100 people affected by 22 different types of cancer: 53 females aged 25-84 and 47 males aged 51-82. Some people had multiple return journeys.

“Being able to book a cab, which will turn up to collect us in a very reasonable time and which is just for ourselves, makes a huge difference to our day. My daughter is much more relaxed which has a direct effect on the number of seizures she has”.

“This last week alone, my husband went back and forth to Barnet General on Monday, Tuesday, Wednesday and Thursday. The total cost to him was £72. The outlay since August last year would have exceeded £2000 had it not been for Advocacy in Barnet and some wonderful neighbours”.

The grant took effect from December 2016 until June 2017, when the grant was exhausted. We are very grateful to CancerLink Barnet for enabling us to demonstrate that people living with cancer are in desperate need of help with their transport needs and to show its impact on cancer patients in Barnet.

Today our thanks go to Jan Dyer of Dorset Macmillan Advocacy for taking the time to share her peer advocate’s point of view:

Cancer advocacy makes a difference now, and could make so much more. Advocacy saves the NHS money and provides better quality care, it makes cancer journeys better and easier to undertake.

Yes, you’re right, it’s very difficult to prove, it can’t be easily quantified. I could give you plenty of examples, but in pounds and pence, no. But I can tell you, that over the last three years, working as a Macmillan Peer Volunteer Advocate, I have seen it for myself. Let me share some of my experiences and pose some questions……

The patients, friends and families I meet don’t always have the tools to hold their home teams together and support their structure, they are floundering in unknown territory, with no experience to draw on.

There is a presumption that every relationship is in a good place at diagnosis, and that would be great but it isn’t the reality. Some rally and rise to the challenge, but some carry baggage on this trip, which can complicate the decision process and can make the going even harder.

Realistically, how much time do our overworked medical teams have to talk to patients and support team? For some, nowhere near enough.

If communication becomes difficult between home and medical teams, who steps in, pursues and explores possible solutions to get things moving forward again? How much easier is it to deal with patients if they come prepared for appointments because they’ve had time to discuss their worries, fear, frustrations and options in an objective environment first? Sometimes patients just want to walk away from appointments having asked all the questions they wanted to, with no ‘I wished I’d asked’’ moments later, with all the confusion and frustration that brings. Let’s face it, if it’s all new, how do you know what you don’t know?

Jan

Then there are the carers who, however well meaning, may not be not equipped for the very new situation in their life. Who want to do their very best, but don’t know how to or have time to find what they need. Who supports them? Anybody can struggle when practical problems come along, meeting unfamiliar challenges in an uncharted world.

Who will have time to discuss and help them make an end of life plan? When all around you, fearing a bad outcome are urging ‘Just be positive’ and driven by a ‘if you don’t talk about it, it won’t happen’ mentality? Who tells them, ‘you don’t have to be super positive every day, its normal to have bad days’, and gives them a safe haven to express this?

The possible situations are endless, and I haven’t even got to the easier basics like ’How can I visit my husband in hospital, I don’t drive?’ ‘How can I pay my bills, when I’m not earning at the moment?’ ‘How can I get my toe nails cut?’ etc. etc….

As an advocate, I have supported real people through all of this and more. I am trained and prepared to have the conversations that people don’t necessarily want to have with loved ones, if indeed they even have anyone to have these conversations with at all.

I would like the service to be offered to every person affected by a cancer diagnosis. The decision to accept the offer is theirs, the right to change their minds, at any time, one way or another is theirs. But in not making them this offer, it is in fact depriving people of a real opportunity. Advocacy offers each individual who is on an ‘unasked for journey through the unknown’ to have a ‘tailor made’ experience and to regain some feeling of control – which could completely change things for them – and in fact for everyone involved.

As an advocate, I have a few frustrations, but my primary one is clear; I don’t understand why an advocate is not offered to everyone.

We keep on top of new services and sources of support for people affected by cancer in Dorset because we recognise that people can benefit from many different types of help. Regional charity Wessex Cancer Trust opened a support centre in Bournemouth last year which is open three days a week for people to drop in.

The centre manager, Emma Ormrod, recently visited us at Help and Care and met Advocacy Manager, Naomi Unwin, Macmillan Senior Advocates/Coordinators Jo Lee and Kathleen Gillett. We discussed how our two services dovetail. The drop in is ideal for people who are able to get out and about and would benefit from conversation with trained volunteers and other people affected by cancer on an adhoc basis. Our service is ideal for those who find it more difficult to travel for whatever reason and offers regular support through an on going partnership with one trained volunteer. We can also give support at the person’s home and accompany them to medical appointments.

We’ve created an ‘at a glance’ document to help the volunteers at each service be aware of what the other service offers to facilitate signposting and referrals. In fact our services already share a volunteer and advocates have visited the centre to accompany people who asked for support in going there for the first time. We look forward to continuing to work in partnership for the benefit of local people.

The Dorset Macmillan Advocacy steering group (Cancer in Older People Development Group) met at Lewis Manning Hospice on a sunny day in Spring with the usual packed agenda.

A key discussion topic was how learning from the advocacy services can feed in to local service improvement. We noted how the team of peer advocates from Getting Heard in Oxfordshire had produced a report with suggestions which had been well received by the local Trust.

There were plenty of informed contributors: Tracy Street, Macmillan Engagement Coordinator for Dorset attended to lead the discussion on user involvement (Tracy had been responsible for patient involvement at the Dorset Cancer Network); Paula Bull who has joined the steering group has been a part of the Dorset Cancer Patient group for many years; Lynn Cherrett, Lead Cancer Nurse at Poole Hospital is working closely with the new Dorset Cancer Partnership (DCP) (the local Cancer Alliance). Together with the DCP chair Lynn is working to create a new Dorset Cancer Patient Experience Group.

It was agreed that the advocacy service will have a part to play in future local cancer service improvement. People affected by cancer (patients and carers) are steering the service, delivering the service and benefiting from the service. They have unique insight into how people in Dorset are experiencing the current cancer care pathways which can be usefully added to the views of trained patient representatives.

Bob Smith, peer volunteer advocate and Paula Bull

The group also welcomed Cait Allen, Chief Executive of regional charity Wessex Cancer Trust as a guest. Cait gave an update on the development of services in Dorset including the Bournemouth Cancer Support Centre which offers drop in support.

We were delighted to be able to thank our volunteers around the time of Volunteers Week for the energy and enthusiasm they give to helping people affected by cancer in Dorset. Staff from Dorset Macmillan Advocacy delivery partners Help and Care and Dorset Advocacy along with Macmillan Partnership Quality Lead Paula Bond and Macmillan Volunteer Services Manager Sam Hudspith joined the volunteers for a very informal cream tea.

The volunteers were then presented with some donated goodies as well as certificates of appreciation from OPAAL. The garden at The Grove Hotel in Bournemouth, which is open to cancer patients and others with serious illness, was a perfect setting for the afternoon on what must have been the hottest day of the year.

With Carers Week underway we thought it might be useful not only to acknowledge and appreciate the support carers provide but also to recognise that sometimes its the carer themselves who get a diagnosis of cancer.

Caring responsibilities can be exhausting enough but imagine the additional strain of a new diagnosis. That’s exactly what happened to John and I recount his story from our Every Step of the Way publication here:

“My name is John. I was born in 1953. I live with my wife who is the same age as me, in fact, we are only a month apart in age. We live in a suburb of a town. I have been a carer to my wife since she had a stroke when she was in her 30’s. That was a terrible thing to happen to someone so young. It left her unable to read or write and her speech is very difficult to understand.

At the beginning of September of 2013 I was diagnosed with cancer of the oesophagus. For the next few weeks I didn’t receive any prognosis or treatment for this condition. I was told that I would be told what was wrong withme at an appointment with the Consultant due in mid-October at the hospital.

I went to that appointment with my wife. I was told that I had a terminal cancer of the throat. I went quite numb. However, my wife wasn’t convinced. She had been a nurse and some of the things that were being said to me were not quite ringing true with her. She tried to explain her feeling to the nurse on reception but she just turned her eyes up. My wife noticed that there were 2 appointments for Smith on the same day.

I was very upset by the news and couldn’t think straight. My wife was doing the best she could but her own problems were not helping her. One day the Stroke Association home visitor called. She told us about the cancer advocacyservice and said that she would make a referral to them. This she did. In the meantime the Doctors did realise that they had told me some of the wrong information. I am not clear how this happened. However, my prognosis hadchanged and they were now saying that my cancer was not necessarily terminal.

Richard called to see me quite soon after that. He was an advocate. I explained my position to him. I told him that I suffered from asbestosis and emphysema and that the Doctors were saying that an operation may not be possibleas the Doctors were concerned about the effects that an anaesthetic may have on my lungs and kidneys.I told Richard all about my problems and those of my wife. I was feeling a little better about things as now there was a ray of hope. I had another appointment coming up and would contact Richard after I had been seen.

I went to see the consultant again in November. They said that I could go into hospital for an operation. I am now in the hospital, but, unfortunately, the site of the operation has become infected and it looks like I will be here for some time.

My wife does visit me but it’s a very difficult journey for her as it’s a long way to go. She does drive but doesn’t find it easy. We have a great deal of problem with communication because I have had a tracheostomy.I didn’t manage to get around to telling Richard that I was going into hospital before I went. I had told him that I would let him know what was happening but things moved very quickly and I didn’t get back to him.

Peer advocate Richard

My wife has found it increasingly difficult to deal with things at home. She seems to be getting letters from the hospital that didn’t make any sense. This was particularly difficult due to her communication problems. She can’t pick up the phone and easily have a conversation with someone. She began to wonder if they were still mixing me up with someone else. She has also had letters from the benefits department asking me to make an appointment to see if I am still eligible for benefits. She can’t deal with this at all.

However, the good news is that Richard had been made aware of my current position. He has contacted my wife and is going to go and see her this week and help her sort things out. That will be a great weight off my mind. I will be able to concentrate on getting well and not worrying about her and what’s going on at home.

The help from the cancer advocacy service is for people ‘affected’ by cancer and not just those that have it. Richard’s input is of great help. He understands my wife’s condition and makes allowances for her communication problems.I don’t know how long I will be in hospital but I am very reassured that Richard is going to help at home.”

Blog Stats

We've published "Every Step of the Way": 13 stories illustrating the difference that independent advocacy makes to older people affected by cancer and "Facing Cancer Together": demonstrating the power of independent advocacy.

You can find and download pdf's via the "About Us" page. You can click on "About Us" on the top right of this page. Alternatively you can order hard copies free from Macmillan Cancer Support by following the same link as above.

We've now also published "Time: our gift to you", 19 volunteers' stories from some of our peer advocates and cancer champions. It can also be downloaded via the "About Us" page on the top right of this page.